Cystic fibrosis is a complex, inherited disease that causes the body's glands
to secrete mucus that is unusually thick and sticky. This leads to problems in
the lungs and gastrointestinal tract, including frequent respiratory infections,
improper digestion and impaired growth.
Cystic fibrosis affects about 30,000 people in the U.S. Although there is no
cure, comprehensive care is available at accredited CF care centers, and
research is being conducted to develop new treatments and to search for a
cure.
The Cystic Fibrosis Foundation (CFF) was established in
1955 by a group of parents of children with CF whose mission was to improve the quality of life for those with CF and
to develop treatments and a cure.
The CFF promotes state-of-the-art specialized care by supporting and
accrediting more than 100 care centers nationwide. Clinical trials and new drug
discovery are conducted efficiently through the creation of CFF Therapeutics (a
non-profit drug discovery and development affiliate) and the CFF Therapeutics
Development Network (a centralized network of accredited CF centers that allows
clinical trials to be streamlined).
Importantly, the CF Foundation network of accredited
care centers gives caregivers and patients access to new and relevant
information. The Cystic Fibrosis
Foundation website is an excellent resource for patients and families who
want to learn more about CF.
Our center-based care
The Cystic Fibrosis Center at Children's Memorial
Hospital has been a CFF-accredited CF care center since 1963. It is committed to
providing exemplary care to each patient and family focused on individualized
preventive care, active management of lung health and nutrition, and
patient and family education.
We accomplish this through quarterly visits (or more)
with the CF team, communication with our families, and educational programming
including the CF Center Newsletter, Nutrition in Bite-Sized Pieces newsletter, and Connections, our multifamily educational and
support program
Multidisciplinary and coordinated CF care
The CF Center
is staffed with a dedicated multidisciplinary team that consists of
physicians (pulmonologists and a gastroenterologist), nurses, nutritionists, respiratory therapists, social
worker, genetic counselor, exercise physiologist and pulmonary function specialists with expertise in
CF care.
The core team (physician, nurse, nutritionist, respiratory therapist and
social worker) is available at every regularly scheduled CF outpatient visit and
by telephone.
The specialty services of a CF gastroenterologist,
diabetes nurse specialists familiar with cystic fibrosis-related diabetes and a
liver transplant nurse practitioner are also available during some outpatient
visits to help coordinate and streamline care.
Other pediatric specialty services
For other medical needs, comprehensive pediatric specialty
medical services are available and include ear, nose and
throat specialists, gastroenterologists, allergists, pediatric surgeons, physical therapists, endocrinologists and
hepatologists (liver specialists).
Children's Memorial has an active liver transplant program with leading
experts in the Division of Gastroenterology, Hepatology and Nutrition.
Together, the comprehensive medical team is well equipped
to serve children for any medical issue that may arise.